Patient and Public Involvement in Clinical Practice Guidelines

Boivin, Antoine; Pakenham, Christine; Burgers, Jako; Légaré, France; St‐Jacques, Sylvie; Gagnon, Serge

doi:10.1177/0272989x11424401

Cited by 139 publications

(199 citation statements)

References 60 publications

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“…Both partners in the consultation need to be engaged in the decision, and SDM does not remove the responsibility of the healthcare professional to provide clear recommendations-on the contrary [28,29]. However, if these options have been discussed to the satisfaction of both parties, litigation is less likely to occur and patients are more likely to follow the recommendations [30,31]. Patients by and large do want to participate in decisions, but we need to distinguish between situations that require problem solving and those that require decision making [32].…”

Section: Evidence Of Risks and Benefitsmentioning

confidence: 99%

Is Shared Decision Making a Utopian Dream or an Achievable Goal?

Blair

2015

Patient

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The idea of shared decision making (SDM) between patient and physician grew out of a generalized challenge to traditional social hierarchies that occurred in the middle of the last century. Governments have espoused SDM, thousands of articles about it have been published, and evidence has shown that it improves some of the healthcare processes as well as patient outcomes. Yet it has not been widely adopted. From their cross-disciplinary perspective (practical theology and clinical medicine), the authors locate this reluctance in the unfolding of scientific paradigm shifts, summarize the perceived risks and benefits of SDM and the evidence for each, and suggest practical, achievable approaches for clinicians. Finally, they explore some important emerging territories for SDM. Key Points for Decision MakersShared decision making (SDM) has proved its worth and is achievable … but debates continue.Several validated models are available right now for use in clinical practice.People can and are being successfully trained in SDM.SDM is needed to address emerging value-laden clinical decisions such as those about caring for the elderly and about genetic testing.

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Section: Evidence Of Risks and Benefitsmentioning

confidence: 99%

Is Shared Decision Making a Utopian Dream or an Achievable Goal?

Blair

2015

Patient

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“…Various techniques have been suggested to get patients and consumers involved [28][29][30]. However, a solid evidence base for decision making about the most effective and costeffective ways to include patient and consumer values in CPGs is currently missing [28,30].…”

Section: Patient Centredness and Shared Decision Makingmentioning

confidence: 99%

“…However, a solid evidence base for decision making about the most effective and costeffective ways to include patient and consumer values in CPGs is currently missing [28,30]. Knowledge is based on descriptive and qualitative studies only or policy papers by CPG-developing organisations [29]. Controlled clinical trials about consumer involvement in CPG development are needed [29,31].…”

Section: Patient Centredness and Shared Decision Makingmentioning

confidence: 99%

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Evidence base in guideline generation in diabetes

Mühlhauser¹,

Meyer

2013

Diabetologia

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During recent years much emphasis has been on the validity, reliability, reproducibility, clinical applicability, clarity, multidisciplinary process, scheduled review and documentation of clinical practice guidelines (CPGs). Still, CPGs show substantial variance in methodological quality. The present paper mainly focuses on two aspects that are particularly critical and contemporary from the perspective of evidence-based medicine: patient centredness and shared decision making, and conflict of interest. Sophisticated patient and consumer involvement at all stages of CPG development could be judged as being the gold standard. However, co-opting patients or consumer representatives and using other techniques of active patient involvement does not replace individual patient preferences in clinical decision-making processes. Current CPGs do not meet patient needs, since they do not provide concise, easy-to-read summaries of the benefits and risks of medicines together with more comprehensive scientific data as a prerequisite for informed or shared decision making. The vast majority of CPG panels have a financial conflict of interest (COI) and under-reporting is common. Not all organisations producing CPGs have set up COI policies, and existing policies vary widely. To solve the problem, CPG experts have recommended that methodologists without any important COI should lead the development process and have primary responsibility. There is a lot of room for other improvements through network transnational activities in the field of CPG development. Waste of time and resources should be avoided through sharing published and unpublished data identified, appraised and extracted for guideline development. The EASD could provide such a clearing house.

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“…The largest hurdle has been the difficulty of reconciling discrepancy between perspectives of the experts with experiences of the patient, suggesting a role for formalized facilitation/mediation. 20 Preference sensitivity and utility of CPGs could be further improved by tailoring recommendations to the specific circumstances of an individual patient. In a mathematical simulation study comparing outcomes for hypertension treatment using generic versus patient-specific CPG computations, Eddy and others demonstrated that individualized CPGs could prevent morbidity and reduce costs more often than adherence to generic guidelines.…”

mentioning

confidence: 99%

What Do Patients Want? Patient Preference in Wound Care

Corbett

Ennis

2014

Advances in Wound Care

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Patient preferences are statements made or actions taken by consumers that reflect their desirability of a range of health options. The concept occupies an increasingly prominent place at the center of healthcare reform, and is connected to all aspects of healthcare, including discovery, research, delivery, outcome, and payment. Patient preference research has focused on shared decisions, decisional aids, and clinical practice guideline development, with limited study in acute and chronic wound care populations. The wound care community has focused primarily on patient focused symptoms and quality of life measurement. With increasing recognition of wound care as a medical specialty and as a public health concern that consumes extensive resources, attention to the preferences of end-users with wounds is necessary. This article will provide an overview of related patient-centered concepts and begin to establish a framework for consideration of patient preference in wound care.From the seminal models of evidence-based practice, patient preference has occupied a prominent place in clinical decision making. More recently, consideration for patient preference emerges as a key component in the redesign of healthcare processes with significance for improving outcome and safety.2 But what are patient preferences? How are they elicited, regarded, and incorporated into recommended action? What interrelated patient-centered concepts have been studied in various patient populations? Lastly, what contribution has the wound care community made to the understanding of patient preference? This article aims to introduce the reader to the issues, begin a dialogue on patient preference in wound care, and suggest opportunities for future discovery.Patient preferences are ''statements by individuals regarding the relative desirability of a range of health experiences, treatment options and health states.'' 3(p259) Preferences reflect beliefs and attitudes of the patient and family, and are related to the process, probability, and severity of potential choices. 4 Patient preference is conceptualized and measured differently across disciplines, from health economics, patient education, psychology, ethics, and using qualitative and quantitative approaches. In the field of medicine, oncology has been the frontrunner in operationalizing methods to determine patient preference for various cancer treatment options, most notably in breast and prostate cancer treatments.

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Patient and Public Involvement in Clinical Practice Guidelines

Abstract: This literature review provides an extensive knowledge base for making PPIPs more effective when developing and implementing CPGs. More research is needed to assess the impact of PPIPs and resources they require.

Cited by 139 publications

References 60 publications

Is Shared Decision Making a Utopian Dream or an Achievable Goal?

Is Shared Decision Making a Utopian Dream or an Achievable Goal?

Evidence base in guideline generation in diabetes

What Do Patients Want? Patient Preference in Wound Care

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